What is your name?
Where are you from?
I am Welsh but I have lived in Brisbane, Queensland, Australia since 2001.
What was happening in your life before the headaches became chronic?
I managed an optometry store where I had worked for 4 years. In my spare time, I was an amateur actress, which also involved singing and dancing. I painted and strolled in the nearby forests and bayside, enjoying the almost constant sunshine and warmth here. I was a member of various social groups, and enjoyed catching up with friends over a cup of tea and bite to eat near our local, Pennisula beaches.
How long ago was that?
My headaches started to become really bad 7 years ago. In 2015, I went part-time after my surgeries, but even a 15 hour week was still too much to bear. I stopped working in 2017, when I couldn’t even manage a 4-hour shift.
Describe a good day with chronic pain.
On a good day, I would manage a conversation with a friend face to face for 60 minutes maximum. I may even manage a little early morning or late afternoon walk by the local canal.
I spent most of my time in shady, quiet places, mainly my home and the local library. I wore earplugs all the time. I couldn't wear sunglasses, spectacles, a hat, sleep on my back, nor use digital screens. I was exhausted and medicated all the time, so socializing was draining and focus was impossible.
Describe a bad day. What does/did the pain feel like.
The pain is like a red-hot iron being held against the right-hand side of my face; it burns into my head, radiating across the right-hand side of my face. My skin feels hot to the touch, and my ear swells. Even the wind blowing against my skin hurts.
After a night of being woken every few hours by the pain, or if I had turned onto the back of my head at all, my only option would be to reach for my anti-epileptic drugs and muscle relaxants. I would angle the blinds in my house nearly closed to minimize glare and keep the doors and windows shut to minimize noise. I moved very gently and slowly due to pain and being medicated. The pain medications make me thirsty so I would drink a lot. I could only answer mobile phone text messages, not phone calls, due to focus issues.
In the mornings, I read a lot and sometimes find a shady spot to sit in my garden. When the pain is peaking, I meditate and practice mindfulness. Though I barely move, the pain increases as the day goes on. When I can’t read anymore, I listen to audio books and meditation tapes. At 5 pm, I have another dose of anti-epileptic medication. This blurs my vision due to the side effects, so reading is difficult. After dinner, I watch a DVD with the color and contrast turned down. At 7 pm, I take my anti-depressant medication. It is a relief to knock myself out with drugs, as I can no longer function with the level of pain by evening.
I battle suicidal thoughts frequently. I dread the day when I wake. I long for an escape. Every month I get worse. My life gets smaller. I have lost so much. I exist in my room.
Where did you experience the pain?
Lower right side at the back of my skull, arching behind my right ear, over my right ear, inside my right eye socket, and down the right-hand side of my face.
What meds were you taking?
Lyrica 150mg 3 times a day
Endep 75mg at night
Baclofen 20-30mg, when needed
If worse, a 5% lignocaine topical skin patch all day and night
Did you have any success with other pain relief methods besides medication?
No. I tried Botox, nerve block and facet joint injections. I had prolotherapy, physiotherapy, acupuncture, bowen therapy, and reiki. I tried the Cefaly tens machine and low-level laser therapy. I went to two chronic pain clinics. I saw a total of 54 therapists. In December 2017, I even had 85% of my breasts removed in an attempt to reduce a pain trigger, all to no avail.
How did you hear about Dr. Peled?
I am a member of 6 Occipital Neuralgia Facebook support forums, in order to share information, learn all I can about my pain and talk to others who understand. Dr. Peled is frequently mentioned on these forums. His articles are posted along with many patient success stories.
What inspired you to speak with him?
A fellow sufferer had actually spoken with him about my case and urged me to consider surgery with Dr. Peled. I had not entertained this thought prior because:
- I was petrified of having another failed surgery that could leave me with the same or worse pain.
- I was worried about how I could afford such a trip and also knew that I would have to travel alone, due to finances.
- The last time I had been to America I had suffered many panic attacks. This was prior to getting sick, and I could not imagine how I would manage the pain and anxiety on my own.
Tell me about your surgery, including when you had it, what happened.
In May 2015, I had my GON and LON excised and in July 2015, I had my Greater Auricular nerves excised. Both these surgeries took place in Brisbane, Australia and did not result in any numbness or significant pain relief.
My occipital neuralgia pain increased and by 2017, I had developed Trigeminal and Supraorbital neuralgia. The pain increased continually.
On October 24, 2018, I arrived in San Francisco. The next day, I met Dr. Peled and he performed diagnostic nerve blocks. I had received blocks 4 times in Australia with no success. Dr. Peled was able to reduce my pain from 9/10 to 1/10 within 30 minutes! I spent the weekend staying with a very kind prior patient of Dr. Peled, who lives a 4-hour drive from San Francisco.
On October 29, Dr. Peled successfully excised my GON, LON, and third occipital nerves. He also removed a neuroma. I spent the night in the Surgery Clinic as my host lived too far away. I was given Norco throughout the night when needed, which was twice only. The following morning, my host and another fellow sufferer shared the drive to take me back to my host’s residence.
On October 31, I returned to Dr. Peled for a pre-flight clearance check-up and he gave me more nerve blocks to boost my in-flight pain relief. My occipital area was numb, the surgical pain manageable. I was definitely better than pre-op!
At all times, I was treated with kindness, which eased my anxiety. I knew that I was receiving expert care.
Do you remember how you felt in the first few days after surgery?
Despite the jet lag, I felt quite energized. I was not battling 24-hour searing pain! My friends and my partner remarked that my face looked younger. I moved less stiffly. The incisions were sore, but nothing compared to the pain I had suffered pre-op. My neck muscles were quite tight but I couldn’t believe that I had no pain at the back of my head. I did have tenderness behind my right ear, and at times, trigeminal twinges, which I had expected. I was able to stop the surgical pain medication within a week post-op.
How are you feeling now?
It has only been a couple of weeks, but I feel different - physically and mentally. I still have no occipital pain. I have trigeminal and supraorbital twinges on some days. I have a very tender spot in my right shoulder. All of this I expected. It is very early on in my recovery, and my nerves are settling, with occasional referred pain. I massage my shoulder and my head twice daily.
Mentally, I am letting go of my identity as a person who suffered pain that stole and crushed her soul. I still have anxiety about various activities, as they caused me pain for so long, but I am breaking through this habituated behaviour. I am remaining cautious while I evaluate the extent of the pain relief. I am scared to get too excited after having my hopes being dashed so many times. I truly believe that my pain relief will remain as this recovery is so different from the post-op periods of the previous two surgeries.
How has your life changed as a result of this surgery?
I can wear sunglasses and a hat. I can turn my head to the right. I can go out in the sunshine without pain. I slept on my back for the first time in 5 years! I am not exhausted all the time. I can catch up with friends for a couple of hours in a café because the noise is no longer an issue and I’m able to focus. My depression has reduced significantly (which I’ve had since I was a child, not caused solely by chronic pain).
I have the option of activities in the day. I went for a walk by the beach without an umbrella, in the early afternoon! I recently finished a presentation for a support group that I co-facilitate and I have started another counseling course. I have resumed gallery and museum visits. I am living!
What is next for you?
Eventually, I want to get back to singing, acting, and dancing. I love being on stage! I continued to go to shows whilst sick, with earplugs and medications. I cried through the performance because I wanted to be where the performers were. I hope to resume weekly acting classes and regular performances.
Due to the number of years I have been in pain, I have few friends. I would like to join social groups to expand my circle.
I would like to return to forest rambling, going on day trips, attending cultural festivals, and painting. I would like to explore more of Queensland with my partner.
I would love for my partner to be able to cradle my head, to touch my hair, to kiss me without being so gentle that it feels like a whisper.
By the end of 2019, I hope to set up my own counseling practice. I am about to qualify as a counselor and will specialize in: chronic pain, mental health, LGBTIQA+, abuse and addiction, grief and loss. Until then, I will continue to add to my qualifications, set up local chronic pain face-to-face support groups, and offer Skype counseling sessions. I have already started a local LGBTIQA+ peer support group.
What would you say to anyone wondering whether to meet Dr. Peled?
I wish I had paid the money, got over my anxiety and had my operation with Dr. Peled in 2015. I would have saved over $20,000 in Australian medical expenses, I would still be employed, and I wouldn’t have had to battle suicidal urges for 3 years.
Dr. Peled is the only person I was willing to let open my head up after the first two failed surgeries in Australia. In my opinion, he is the world expert in this field. Why wouldn’t you want him to take care of you?
Describe your overall experience with Dr. Peled and his office.
Dr. Peled’s team is very accomplished with assisting overseas patients and with personalized communication frequently made via Skype.
Dr. Peled has the best bedside manner of any specialist I have ever met, and I have met a lot! He is a kind man. Dr. Peled and his team assisted me patiently with the many travel dramas that occurred.
The surgery center staff knew that I had traveled alone, and also showed me a lot of warmth.
Do you have any advice for prospective patients who are thinking of coming to the practice?
Make the call, change your life, do it now.